There have been a few discussions lately about my brother and this final stage of illness. Somebody family is at the hospital with him always and we provide pretty much all the care, aided by nursing staff as required. We have a carer bed there and also a night time carer to help out: it is very hard to keep awake all night after these months of exhaustion and strain. Also, we need three people to lift and turn him because he is so big and heavy.

He doesn’t much respond any more but we can stroke him and talk to him and sometimes it feels a very peaceful place to be in.


Something my SIL said to the palliative care nurse co-coordinator yesterday really rankled. We were talking about the horrible loss of identity that comes with brain tumours and how he had changed almost immediately after the first surgery, due to brain trauma. In essence, the person he was ceased to exist. She said that she was thankful that all the family drew together and told him how much he mattered before the surgery and the change.


I think she forgot that I didn’t because I didn’t know. I was away and my mother chose to not tell me. She also didn’t tell my husband but he found out accidentally, via a FB chat with my SIL’s sister’s husband (if you can follow that relationship link!). He then checked in with  my mother and she basically bullied him into keeping quiet, against his better instincts.


Of course, I then found out by accident as well but it was too late to talk to him in person. I will always regret that. I’ve told him and told him how much he means to me and how I value our relationship since then but I don’t know he much he comprehends. I need to get over this and stop feeling resentful towards my mother but it is hard.


Night duty again tonight so now bed to try and get some sleep before then.

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One Response to nope

  1. Brad (Griff) says:

    When Tina had her surgery, she lost a lot of who she was. The hardest thing was that she couldn’t put her thoughts into words, or write them down in a cohesive way. At the time, I was focussed on looking after her and didn’t much read the things in her note pad. Yes, she was still trying to write, but it all appeared like gobbledegook. After she passed, I read and reread her words. One entry hit me like a hammer. She had been trying to write, ‘if only I had a little more time’. I carry the guilt of not being in the now with her then, as I was more focused on looking after her. Keep letting your brother know you love him, because he is still there and he is listening. Much love my friend.

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